Mon June 11, 2012

Op-Ed: Eugenics Specter Hangs Over DNA Sequencing

Last week, researchers at the University of Washington announced a success. They mapped the entire genome of a fetus using only a blood sample from the mother and a saliva sample from the father. The breakthrough makes it possible for expectant parents to get much more information on genetic disorders. In an op-ed in yesterday's New York Times, columnist Ross Douthat worried about the implications, given what happens with more limited information available right now. In some places, 90 percent of women who get a positive test for Down syndrome opt to terminate the pregnancy.

If you're expecting, how much do you want to know? Give us a call, 800-989-8255. Email us: talk@npr.org. You can also join the conversation and find a link to Ross Douthat's op-ed at our website, go to npr.org. New York Times columnist Ralph Douthat joins us here in Studio 3A. Always nice to have you on the program.

ROSS DOUTHAT: Thanks so much for having me. It's a pleasure.

CONAN: And you introduced a scary word into this conversation: eugenics.

DOUTHAT: Right. I start the piece with a reference to another piece, actually, a fascinating article that ran in the Yale Alumni Magazine recently by the writer Richard Conniff, I believe. And he was talking about essentially an era that's sort of well-known in American history but maybe not as well-known as it should be, which was this long period before World War I where a large swath of the American intelligentsia - figures ranging from presidents like Theodore Roosevelt to Yale economists like the subject of the piece, to Margaret Sanger, the founder of Planned Parenthood and so on - were fascinated by the idea of eugenics and by the idea that breakthroughs in that era in genetic knowledge and so on were paving the way for, in a sense, a sort of breeding out of unfitness in the human population.

And depending on the person, depending on the thinker, unfitness could be defined in racial terms. It could be defined in terms of mental and physical handicaps and so on. And this was an era that was associated with very specific interventions, famous attempts to sterilize people with various forms of...

CONAN: Some people still being paid for that in North Carolina.

DOUTHAT: Exactly, yes. And there was the famous Supreme Court decision where one of these programs was upheld with the famous line that - I think three generation of imbeciles is enough. But all of that today is shadowed - and for very good reason - by the experience of World War II, the Holocaust, and not only the specific anti-Semitism of Hitler's regime but the general sort of eugenic cast to the Nazi quest for race fitness and so on. So it's an era that we have mercifully put behind us and admirably put behind us.

But the point I make in the column is that we've entered an era, in fact, where what was often pseudoscientific 100 or 75 years ago is actually scientific today. And again, we no longer, mercifully, have some of the ideas that people had in the 1920s and '30s about racial fitness and racial hygiene and so on. But what we do have now is, as you said in the opening, the power to screen fetuses, embryos and so on, for an ever-widening range of genetic disorders that in turn, in the case of Down syndrome, has led to the large-scale use of abortion to, let's say, preempt, terminate developing pregnancies that - where the embryo or fetus could suffer from Down syndrome.

And so it raises - you know, obviously the moral dilemma turns in part on what you think about abortion as, you know, all - so many debates in American life and culture come back to what you think about abortion. But it does raise questions like to what extent is a sort of eugenic spirit different if it is parents making the choices rather than the state, right? I mean, this is obviously a huge difference between that era and our own, that it is not state sponsored.

It may be state encouraged. You do have medical guidelines and so on that, I think, encourage people to get genetic tests in pregnancy and so on. But it certainly - it's not a centralized process. It's decentralized. But anyway, so those were some of the issues that I was trying to raise.

CONAN: And no small issues, and it gets into very - some murky areas because, as you suggest, nobody is talking - nobody is talking about the state making these decisions for anybody. Given that, don't parents have the right - if abortion is legal, don't parents have the right to make these choices on the basis of the best information available?

DOUTHAT: Well, certainly, if abortion is legal, it becomes very difficult to make the argument that you couldn't, you know, I mean, if it's legal to get an abortion for almost any reason, then certainly, it has to be legal to get an abortion if you're faced with a possibly devastating medical diagnosis. But at the same time, I think this is a place where even a lot of very pro-choice Americans become, I think, justifiably squeamish. And, you know, my own cards on the table, I have strong pro-life sentiments myself. So listeners should keep all of that in the background. But I think it's one thing to, you know, we're sort of in the process of moving from diagnoses of fatal conditions, potentially fatal conditions leading to abortion...

CONAN: Spina bifida...

DOUTHAT: ...spina bifida and so on, you know, to, obviously, Down syndrome, then beyond that, anemia, Huntington's disease and so on. And then lurking beyond the disease question is - and this really is still science fiction, but the extent to which mapping the genome can lead to projections about, you know, intelligence, strength and so on, all the really eugenic side of things, I supposed and...

CONAN: The blond hair, blue eyes and...

DOUTHAT: Exactly. And the question, going forward, is to what extend will people have abortions in cases potentially like that in 50 years, 75 years and so on? And I think what's interesting is that we have enough knowledge in a sense we have just - we have enough to kill in many cases, to terminate, preempt, whatever language you choose, without having the knowledge to cure and engineer. So it isn't that we're necessarily hurdling towards a future like the movie "Gattaca," where people can perfectly engineer their children in advance. It's more than...

CONAN: I saw that picture. That didn't work out so good.

DOUTHAT: It didn't work out so well. But we're moving towards a future at the very least where we have knowledge and the means to terminate, I supposed, and that leads, in the case of Down syndrome, to an awful lot of terminations.

CONAN: But you can also see the choices that parents have, for example, if you are the carrier of the gene for breast cancer. Again, it's a tendency, it's not fate. But nevertheless, you might want to know if you're - if the fetus carried the gene.

DOUTHAT: Well, and certainly. And many of these cases going forward you'll be having parents getting these diagnoses, and you probably won't have the kind of 90 percent abortion rate that you have with Down syndrome. You'll have a lot of parents just taking this knowledge and saying, well, I want to be able to tell my child that, you know, you have a higher risk of breast cancer or heart diseases or something like that. And it's not...

CONAN: Or even to the point of saying we want the right doctors in the room if it's confirmed?

DOUTHAT: We want the right doctors in the room, exactly, and this is the thing as so often with scientific advances. Even, you know, the ethical issues that they raise are accompanied by tremendous gifts that they offer, and it's very difficult to say, well, you know, we shouldn't, you know, the idea that this has to be forbidden knowledge in some sense is an idea that, I think, most scientists would reject, but most parents as well.

CONAN: We're talking with Ross Douthat, the columnist for The New York Times. So, given what we're thinking about now, and this test is so expensive now we're talking about down the road, but as Ross Douthat pointed out in his column, inevitably the costs will come down. This information will be more available. So if you're an expecting parent, how much do you want to know? 800-989-8255. Email us: talk@npr.org. And let's see if we can get Jeff on the line. Jeff's with us from Birmingham.

JEFF: Hi. How are you doing?

CONAN: Good, thanks.

DOUTHAT: Hey, Jeff.

JEFF: And so me and my wife are expecting our second child, and we're, you know, 29 years old. We had our first baby. He's 21 months, totally healthy now, et cetera, but we had the testing for, I think, it's trisomy 18 and trisomy 21. Is that correct?

DOUTHAT: That's - yes, that's some of the testing that's offered now.

JEFF: You know, some of the pre-testing that statistics bore out that we were totally fine, et cetera. So we didn't go on and get into more evasive things, and we're doing that again. But even with the first time, it was fairly controversial with my wife because the 18, we were certain about what we would do, right, as far as the baby potentially being stillborn or just being a miscarriage. Anyway - but the 21, she still holds out, like, my feeling is that I would have a - I have to really think about it and think that I would support the idea of termination. But she is totally against it. Just not on significant religious principle because, you know, I'm an atheist, she's kind of a deist just generally, whatever. But she just kind of doesn't like the premise generally.

But - and my friend had the exact same experience with his wife, sort of, this is sort of really vague and, like, wow, I don't know? But, I mean, it's such a difficult decision, I think, like, and I just would fear - like I still want to do the testing for the 18 'cause that's sort of a scary possibility, but just sort of throwing it out there that I can see that that's a tension for many parents, just that alone, not to mention less probabilistically sure of things like the cancer issues.

But also, I just want to quickly say before I shut up is that I do hear a lot of like the stuff in these arguments. They're based on slippery slope, kind of, sort of fallacious logic, I think, that, you know, that technology will lead to this these. I mean, I think we can use - make, you know, moral arguments and use reason and a logic and evidence to create good policies to try to tell patients about what things to do and make good decisions and then they don't necessarily down to this horrific War World II, you know, route.

CONAN: I don't think anybody is talking about that.

JEFF: Oh, that's good.

CONAN: Right.

DOUTHAT: No. No, no. And I think - but I think the, you know, the points that he's raising are excellent ones, and it's interesting. Obviously, it varies from doctor to doctor and hospital to the hospital, but I think most people now who go through a pregnancy, this is almost sort of a rite of passage where you decide which tests to have. And then at this point - and this is part of why this new test could potentially be a kind of breakthrough. At this point, you have to make sort of a second-order decision where if the initial number comes back and says, well, you have a slightly higher than average odds, then you have to decide...

JEFF: Right.

DOUTHAT: ...if you go forward with a more invasive amniocentesis-style procedure, which carrier risks of its own. So there's sort of layers within in layers.

JEFF: True.

DOUTHAT: And then the other point I'd make just on the slippery slope question. I think it's true that - and certainly, I wouldn't want to be seen as making the argument that, you know, there is this sort of horrific Nazi-style future lurking around the corner and so on. By the same token, I think one thing that does happen with slippery slopes is that they slip sort of slowly and imperceptibly, and we just sort of get used to the fact that we've slipped down them.

So in the case of Down syndrome, I think if you had gone back to the America of 30 or 40 years ago when a lot of these techniques were just being pioneered, and you would have said, well, you know, in the future, 90 percent of fetuses that where there's a positive test for Down syndrome will be aborted, I think that would have been perceived as kind of a wild leap, perhaps, from where the science was in 1975 or 1980, where the technology was and so on.

But, in fact, once you put this information into people's hands, those tended to be the choices that the made. So I just - I'd be cautious about downplaying the slippery slope argument completely.

JEFF: Well, I'm not. I mean, like I said with my - in my decision and I was, you know, I mean, however terrible it sounds, I guess, I mean, for me, I can, you know, they talked about, this 90 percent, how terrible it'd be. But I guess that is a matter of perspective though.

CONAN: And it's 90 percent in some places. These are localized studies.

JEFF: Well, I'm just saying, whatever the decision is, it's very - it seems like it's easy in common language, in common - just in general to say, wow, you will terminate your child's pregnant - but I mean, I feel very - I do feel conflicted about it. Obviously, if it were to happen and I would make the decision, it wouldn't be easy. And I'm not saying that I would make one or the other, but I can see me reasoning to the point to say that we would, you know, we'll terminate the pregnancy and have another child.

DOUTHAT: Well, and a lot of it, again, depends on what you think about the moral status of the fetus and the embryo because if the fetus and the embryo doesn't really have human rights, then in a sense, this is this gift, in a way, that we have this period when we can sort of eradicate these conditions, alleviate human suffering and so on. I'm obviously skeptical of that idea, but it is an idea that follows from certain popular premises.

CONAN: Jeff, thanks very much for the call. Good luck.

JEFF: Thank you.

CONAN: We're talking with Ross Douthat of The New York Times. You're listening to TALK OF THE NATION from NPR News. And let's get Kimberly on the line. Kimberly with us from Salt Lake City. Are you there? It's...

KIMBERLY: ...not to have any genetic testing when I was pregnant with either of my children because I knew that my ex-husband would want me to terminate the pregnancy if anything were to come out positive. And so just to avoid that entire argument of the possibility of an abortion, I opted not to get any testing. I think that it's fascinating and I'd like to know, but abortion was not an option for me, and I just did not want to have that fight.

CONAN: Was he then your ex-husband or is he now your ex-husband?

KIMBERLY: He's now my ex-husband.

CONAN: So somebody with a - an important voice in the conversation at that time.

KIMBERLY: Yes, he was a very important voice, but I'm actually pro-choice but that's just not the choice I would make. So I think that the technology of being able to find things out and to know if your children are going to be at risk for certain diseases down the road in life or that they carry gene, I think that that's fantastic and wonderful information to know.

CONAN: All right. Thanks very much for the call, Kimberly.

KIMBERLY: Yes, thank you.

CONAN: Here's an email we have from Mary in Massachusetts: I know of a lady who's told by her doctor that her baby was going to have problems after an amniocentesis, and she considered an abortion. A nurse in the family talked her out of it. The baby just graduated from - with high honors from high school. I'm not sure this information is always right or good. And for that...

DOUTHAT: I know and that's true. I mean, again, as science advances, the...

CONAN: And even - much better - information will not be perfect.

DOUTHAT: Right, the information gets better. But you are dealing - and again, I'm not a scientist, so take this with a grain of salt. But in general, you are dealing with probabilities in almost all cases. And you're dealing with - you're making one decision based on a set of probabilities that leads to another decision that even if it isn't based on probabilities, there's always the possibility of error. So it's incredibly fraught, and I don't really have anything to add to the caller from Salt Lake City's comments excepts that that's actually kind of, sort of a remarkable portrait of how these kind of issues in sort of quite, maybe not often talked about ways, interact with married life, parenting and so on in America.

CONAN: Patty emails us: I grew up with a parent both physically and mentally ill, and with that burden upon me, looked within and sincerely decided, as childbearing was at that time an all-or-nothing situation with no opportunity for pre-birth information, that I could not risk bringing a child forth and possibly being tethered with a significant burden again. Had the option of this post-conception but pre-birth test been available, I would have had a chance of being a natural parent. I do believe this is risky moral ground, but my personal experience, of course, allowing this testing to continue.

And again, just as I don't think any state-sponsored eugenics is in the offing, I don't think bans on this kind of testing is in the offing either.

DOUTHAT: Oh, no. It's almost impossible to imagine a ban on that kind of testing. You could potentially imagine, I supposed, a ban on abortion in some circumstances associated with some tests as, you know, I mean, it's a separate debate in many ways, but we've been having a debate here in Washington about a ban on sex-selective abortion, which is obviously a big issue in east and south Asia and, arguably, an issue in some immigrant communities in the United States. And in both case, you have this question that goes back to the initial debate about abortion rights. To what extend can we as society say abortion is OK in general, but we're going to pass judgment on the specific reason for abortion? And it's obviously a very tricky ground.

CONAN: Ross Douthat, thanks very much for your time today.

DOUTHAT: Thanks so much for having me.

CONAN: His new book is "Bad Religion: How We Became a Nation of Heretics." He joined us here in Studio 3A. Tomorrow from the White House. First Lady Michelle Obama will join us. We'll see you then. TALK OF THE NATION from NPR News, I'm Neal Conan in Washington. Transcript provided by NPR, Copyright NPR.